I had my 3 month post-op (posterior fossa decompression surgery with laminectomy and duraplasty) MRI today. My syrinx, which was 7 mm wide in 2 places, is now completely gone as if it never existed. The surgery wasn't that bad. I was back at work after 6 1/2 weeks. They used my scalp as the patch for my brain, which seems so far to have worked out very well. My incision was numb at first, but gradually I've gotten all the feeling back.

It has been since May 2010 since I had my decompression surgery. The surgery helped me to no longer have random fevers, and I've stopped having bouts where I felt like I had the flu. I stopped having what I called "neurological storms" where it seemed like I was feeling a lot of symptoms, sensations, at the same time - usually after overdoing or after the dentist. I was having MS-like sensations before the surgery, like wiggle-work feelings, and and it took a full year before they completely went away. I was having shooting pain down my arm before the surgery when I coughed, sneezed or laughed, and that went away. My syrinx disappeared completely. I battle with fatigue, but in the last few months, even that has gotten a little better as far as my baseline (with low activity) and lately I've felt like it's improving little by little. I still have the scrape/sunburn burning pain from the damage caused by the syrinx. I deal with this by continuing to wear soft clothes, keeping myself the right temperature and keeping air off my arms, and knowing it gets intense and eases to tolerable depending on the weather and everything else, and distracting myself until it does get better. I have muscle problems, especially when I travel, but for regular days without overdoing, I've discovered that I do very well with Baclofen 35-40 mg per day. I've learned to take the full 40 for a few days following overdoing and I recover much faster. I was able to install a dryer vent in the back of the dryer, hooking it into the wall with only three days extra pain, which for me was a miracle. I was able to fix my mother's vacuum and actually use it to test it out and only had a few days' extra pain with 40 mg of Baclofen. In the past my muscles would have held on for a couple of weeks with that much activity since I traveled 4 hours to get to her house. With the Baclofen I press my shoulders and there is a normal "give" instead of being completely hard. I can also turn my neck without the fear it will kick back and end up with a crick, and I can do things "up" better - I was having trouble raising my arms with ease. The feelings like someone is pressing a knuckle into my muscles are much more rare. I can feel my bladder more with the Baclofen - without it, I go the restroom by time instead of by urge because I don't feel it. I'm working on my sleeping posture to minimize putting my head forward, which causes me to have another layer of pain, like fibromyalgia pain. I've been very successful in that just by putting myself in a better position each time I wake up. I've been so pleased with the surgery. I no longer feel like I'm going downhill year-to-year, and have found a lot of strategies to make things easier. I work full time and no longer feel scared that one day I won't be able to do it.

It has been 4 years now since my posterior fossa decompression surgery with duraplasty, done at the NIH by Dr. Heiss. I had an MRI recently that showed my syrinx was still gone. I still have flare-ups and have to be careful what I do, but on the Baclofen I do well. I recently had to work lots of days of overtime on a special project at work that lasted for a few weeks and was able to do it. Traveling is still bad - I flare-up after it - but I just plan around that, like take an extra day off of work at some point during the week after doing it. And the weather affects me - I have to remind myself that it's always up and down. All in all though, my fears of having to retire way early are gone. I like to post my success story here because there are lots of people newly diagnosed who are scared like I was.